1. Freedom of Choice: Your Right, Our Responsibility
Mary L. Radnofsky, PhD
G. Allen Power, MD
Dementia Action Alliance
June 26, 2017

2. Introductions

3. Remarkable Quote
“Oppressive and discriminatory practices often have their foothold in the well-meaning, well-intentioned ideas of those least intending to do harm.” Bartlett & O’Connor (2010)

4. Suggested Hierarchy of Well-Being Domains

5. The Problem with BPSD Relegates people’s expressions to brain disease
Ignores relational, environmental, and historical factors
Pathologises normal expressions
Uses flawed systems of categorisation
Creates a slippery slope to drug use
Does not explain how drug use has been successfully eliminated in many aged care homes
Misapplies psychiatric labels, such as psychosis, delusions and hallucinations
Has led to inappropriate drug approvals in some countries

6. Personal Expressions May Represent…
Unmet needs / Challenges to well-being*
Sensory Challenges*
New communication pathways*
New methods of interpreting and problem solving*
Response to physical or relational aspects of environment*
May be perfectly normal reactions, considering the circumstances!*
“Dignity distress”*
(*NO medication will help these!)

7. Shifting Paradigms How would you respond if you were told:
“90% of people living with dementia will experience a BPSD during the course of their illness.” VS
“90% of people living will dementia will find themselves in a situation in which their well-being is not adequately supported.”

8. Excessive concern with downside risk, relative to upside risk
Surplus Safety
Excessive concern with downside risk, relative to upside risk
Downside risk: The chance that something will turn out worse than expected
Upside risk: The chance that something will turn out better than expected
With dementia, nearly all of the focus is on downside risk

9. 7 Steps to Negotiating Risk (Power, 2014)
Discussion
Exploration of values, tie-in to well-being
Conditions of empowerment
Continuum of empowerment
Collaborative decision
Documentation and monitoring of results
Keeping other stakeholders abreast of the process